And here we go! Mommy/Bubby road trip to Nashville! He finally got his chicken minis!!! So excited for a week couple of days with beautiful weather! AND HE ABSOLUTELY GOT THE TEN COUNT!!!!!!! He woke…
Shots, ANC counts, and spine tan
He had some pretty rough moments after anesthesia, but we made it! Quite a day. But most are right now. Then, we learned that I would have to administer a shot today through Sunday if…
Been a minute :) – Anesthesia, everything is hard, work, new platform, and ready for the weekend!
We had a breakthrough with anesthesia today. It has been so difficult to feel his rage as he wakes up. The screaming, hitting, choking. All the things that are not even remotely our little guy….
Anesthesia Rage, Filgrastim, and Charlotte
Just a short update. We settled into a rhythm of sorts this week, though the days have been pretty full. We continue to struggle with Alexander’s anesthesia rage, but we may be zeroing in on…
Post-Anesthesia Anger and the 8-Bit Antidote
We are settling in to the routine rhythm of treatment. One of the constants so far has been Alexander’s anxiety at getting the anesthesia before his radiation and his anger upon waking up from it….
Port Placement and Anesthesia Issues
Today started off with some unnecessary stress: I called for a shuttle from RMH to St. Jude in what I thought was plenty of time, but after waiting a while, I decided we would just…
Start of Treatment and Another Gut Punch
This morning started eeeaaaarrrrrllllyyyyy. We got to the hospital at 6:00 for an MRI to take another look at a little spot the docs were unsure of, but we weren’t worried. After all the necessary…
Survival Rate, Special Visitors, Fun, and Apprehension
Yesterday was a banner day for Alexander. In the afternoon, he got to have a play date with his good friend Sydney–the two of them are so cute together! In the morning, two very special…
Surrounded by Family, Friends, and Neighbors
Last night we had a much-needed gathering at home with our wonderful neighbors, friends, and family. After a month of feeling isolated from home and unsettled in every way, being in our home and feeling…
Tumor Board
I just wanted to expand on Christy’s expression of anger yesterday. I feel it too, in waves. We are not angry at people; we are angry at the obscene injustice of this situation. Hours after…